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LS and sex

Posted , 14 users are following.

Jessicat
Jessicat

Hi I had sex with my bf and it was too painful we had to stop and I burst out crying, it's normally just abit painful at the start , but this time it was just too much, he was really understanding but it just really upset me thinking that I mightn't be able to have sex in the near future as I'm only 20, and wish to have children one day as well. I've been using dilators but I hadnt used them for about a week  prior to sex. But I was just wondering where about the pain is for other people during sex, if you have any, as I get it around the skin just before the opening of the vagina, but I also get it slightly inside the opening where the mucous membrane kind of starts. This made me think does LS affect that part? And now I'm wondering if I may have vulvodydinia as well as I know they can both occur together. Any insight on this would be appreciated 

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24 Replies

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  • frankie6220
    frankie6220 Jessicat

    Posted

    Hi. I wanted to reply to you to help reassure you about LS and having children, as I recently became a mum for the first time. I was only diagnosed with LS at around 30, but have since realised I have had it since a teenager as I have always found sex painful. You could say I am a kind of worse case scenario on the sex front, as I have basically not had penetrative sex much at all ('luckily' my long term partner has a relatively low sex drive and we have always just enjoyed other sexual activities!). But in terms of becoming a mum, where there's a will there's a way! It may sound shocking to some, but we actually used what is essentially a home insemination kit. This may scare you, thinking you don't want to have to resort to the same lengths to get pregnant, but I'm sure you won't have to (especially if you have sex now and use dilators regularly) and I am only writing this to reassure you that LS doesn't need to stop you living the life you want. I see my story as hugely positive, as despite the problems I have, me and my husband now have the most beautiful baby boy and couldn't give two hoots about how he was conceived! In terms of pregnancy and labour I believe it did not affect my LS. My labour and tearing was no worse than friends I know and my healing went well. I am now breastfeeding and am having a mild flare up, but it's manageable.

    Now our son is a few months old I am starting to consider really tackling my problems with sex and would appreciate any info people have on getting dilators. Can you get them from your GP in the UK? Was your GP knowledgeable about using them to help with LS or did you have to inform them about them?

    • Jessicat
      Jessicat frankie6220

      Posted

      That's wonderful news, I wish you and your family well. Your reply has really gave me some reassurance. I bought my dilators off of amazon, but I believe your gp will give them to you. I just didn't ask as my gp is slightly clueless on this condition and would have told me to ask my dermatologist, which I can't just get an appointment at the snap of my fingers. I think the dilators from Amazon where about £25 and you get 4 sizes in the pack
    • Okpeeps
      Okpeeps frankie6220

      Posted

      Hi there I bought my dilators from Amazon also. My GP never mentioned them at all. So glad my friend recommended them. Believe women who have undergone radiotherapy are recommended them also.
  • Bridge_of_Sighs
    Bridge_of_Sighs Jessicat

    Posted

    I went to buy my dilators directly from the company and they told me that I could pay them £45 or I could get my GP to prescribe them. I went to my GP who was a bit surprised and looked it up, then said 'Yes I can' and wrote me a prescription. The parmacist ordered them in and I've been using them ever since. Can't remember the brand name, sorry. Want to say Mumford and... but that's a band! It's something like that though.

    Good luck.

    • frankie6220
      frankie6220 Bridge_of_Sighs

      Posted

      I decided to buy a set of dilators from Amazon in the end, so they should be delivered this week. My only annoyance at getting them this way is that I don't know how to remove them from my Amazon purchase history, so I had better be careful about logging in to my account from now on when friends and family are about or they will know that little bit more about me than I would like them too!!
  • lauren33630
    lauren33630 Jessicat

    Posted

    I'm 24 and also with LS. I have always been in positive sexual relationships where I was having really (really!) Regular sex and after becoming single i developed LS symptoms.

    I also have a list of other healthcare problems, so i am kind of used to the unfairness of it all for the age category... but something that affects me so personally like this is a very difficult one to deal with.

    I stress a lot and being able to have sex and connect with my partner is one of those things that brings me temporary relief, fun and takes me away for while... Nd the idea that one day i might not be able to do that is just horrible.

    Anyway.. just wanted to reach out. Try to keep smiling and doing things that make you feel good. Bad feels and worry arent good for our immune systems (i know its hard!)

  • do21103
    do21103 Jessicat

    Posted

    Hey Jessicat, I completely understand you as I have LS since I was about 5 years old and I am sexually active since I was 16. At the moment I am 28 and having regular sex life. Sometimes with a bit of discomfort, but I learned about myself what are the conditions that I need to have in order to actually have sex and enjoy it.

    First of all - LOTS of coconut oil. If you are using condoms then you can't use oils so find a good water based lubricant for sensitive skin (I personally like "Slippery Stuff Paraben-Free Gel Personal Lubricant Water Soluble" by Wallace O'Farrell) and use LOTS of it.

    Second, make sure you are naturally wet enough and ready regardless of the lube/oil and maybe start with a few minutes of one finger massage. Since you use dilators I assume you have been to Pelvic Floor Physical Therapy before? This is the same massage the therapist starts with. Just relax, breath, and ask your partner to gently massage you in the tender areas. After that - if you are turned on and ready you can move forward with penetration.

    The more sex I have the less painful and more enjoyable the sex is for me. If I have a few days without penetration I know it might be a bit painful next time. This is where dilators come in handy.

    To your question about Vulvodydinia/Vestibulitis - I also suffer from it. Wether it's muscles tention or pain in the entrance at 6 o'clock. I use dilators and also TheraWand. Ideally I would practice 3 times a week for about 20 minutes, but practically it's hard for me to keep up with the schedule.

    The fact is that pelvic floor physical therapy is extremely helpful for both LS and Vestibulitis. The tissue needs to be lubricated, massaged, and stretched constantly in order to function.

    Besides that, I also use coconut oil twice a day morning and evening. I spread it everywhere from the top of my vagina until the very bottom and perineum, also a bit inside the vagina and inside the anus.

    I hope what I wrote helps you!

    Good luck!

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